Perplexed by Skin Problem

[UkrainianTracksuit]

This is a bit of a gross posting but if we can't be open here, where can we be?

I'm encountering a skin issue that has been progressing for 3 months.  I've had it on/off for awhile but they lessened for a short period.  And then back with a vengeance!  I have sore, red and semi-open sores down my arms, back, torso and starting with my legs.  They are not bacne so that isn't an option.  They do not itch but they are painful.  My phosphorus and calcium levels are in normal ranges so that has been ruled out.

When I first showed the nurses in center, they had the neph come in to see me.  After looking at my levels, he then told me that my skin is dry and to use a strong moisturizer.  No problem.  However, there was no change.  After, he told me to stop using any perfumes or bath products to see if that makes a difference.  I did that and continue to do so.  No change.  As a third option, he suggested that I "get some sunshine" or phototherapy.  That's all fine and dandy but I am on a couple of medications that say to avoid sunlight.  I brought this up and was told that in some cases, the benefit of the sunlight would be better.  I believe this is just folklore.

Finally, I was referred to a dermatologist.  The dermatologist looked at my medications and the sores.  Again, she was concerned if this was calcium and phosphorus related. She concluded that "in her experience", this was consistent with a reaction to being on HD.  Again, I heard all the same things: HD causes brittle skin, spots, rashes so learn to expect these changes.  She said would write up a report for my nephrologist.  No relief, no prescription.

I went to my general practitioner and he couldn't be bothered.  I'm being run around in circles. 

I complained, yet again, to my clinic nurse and nephrologist.  He suggested I use cornstarch before we add another prescription.  The cornstarch helps the pain for a little bit but I am left with these stupid sores.

My nephrologist doesn't consider this to be a big deal however it is a big deal to me.  They are painful and I have to watch which clothes I wear because if a garment seam touches them, ouch!  I'm tired of finding little spots of blood on my clothes.  The weather is glorious here and I have to stay dressed like a mummy because I am so embarrassed of these sores.  My husband is repulsed as well.  Did I say they are painful?

Has anyone encountered such a skin problem?  What did their medical team suggest for treatment or prescriptions?  All of my monthly labs are in range except for my HB and HTC (which are low).

[MuddyGurl]

Hello, I don't THINK it is weeping psoriasis, but it SOUNDS exactly like it.

When I had the worst flare up of psoriasis I had exactly what you described..I could not wear white, or  I'd bleed into the sleeves, etc. the fabric would stick to the skin, I would wake an have the bed sheets stuck to spots, causing pain and bleeding..it is worth crying about, and I know your frustration.

What helped psoriasis was sunbathing…  NOT noon to 3 or the HOTTEST time of day, but morning 10-11 for just 15 MIN, NO MORE>  mild exposure.

if you are in a higher latitude you find the weakest time of sunlight.

in fact the light  treatment here is called PUVA A & B..you stand in a closed box, naked with a pillowcase over your head, and your arms in the air to reach the underarms ( I called this the Naked Iranian terrorist position)  and the UVA light affects your skin, giving you a  "medical" tan AND  drying up the plaques and stopping the cracking and bleeding skin.

A drug called Oxsoralen is given 2 hours before and 'opens" the skin pores to the PUVA light..you must protect the eyes and face, and  cannot be in the main sunlight that day…. some silly girls have taken the drug  oxsoralen to tan faster and died by cooking their cells from the inside out....truth.

I wonder if your reaction to something going on is mimicking psoriasis?  another Tx is acupuncture..the skin  organ is directly related to the stomach, and i Chinese medicine there are herbs taken to calm the stomach, and thus the skin… I was desperate enough to try acupuncture, I didnt mound the needles, but the therapy is not accepted by the AMA, and you are laughed at…but now 30 years later maybe there is more acceptance.

A strong anti cancer medicine Methotrexate is also used to 'cure' and remove the serious skiing lesions, but  you have to be in pretty bad shape to have it prescribed by a dermatologist.

Which your Derm DID NOT do or mention…  since a dry powder like cornstarch does not work I wonder if using a NEW jar of petroleum jelly…carefully using a sterie spoon to remove and place on a plate, then use the jelly to coat a few sores to test?  OR possibly olive oil?

OK this is all I can remember that I tried…eventually what worked for me was peace of mind..removing stress from my life…moving to a quiet cool and green small town, finding calm in relationships..all of it.

I hope you can find something that works, and do share.

[kristina]

Hello Ukrainian Tracksuit,
I am very sorry about your skin problem and I wonder whether or not you suffer from an allergy?
Many years ago I had a skin-problem and it turned out to be an allergy to one of the BP-medications I was taking at the time.
As soon as the BP-medication was exchanged for another medication of another BP-medication-group,
my skin-problem subsided instantly and has stayed away from me ever since... (touch wood it cointinues like that !)
I do hope you find the reason for you skin-problem soon and I understand how annoying it can be...
I wish you good luck from Kristina.

P.S. Sorting out an allergy can be a very tricky and long-winded process and it needs lots of patience on your side!
The only way that has helped me was to eliminate at first one food after another, one washing-powder etc. after another
and slowly move forward with the eliminating-process...
(Patience is needed there!!!) In my case the only thing that was left in the end was my medication and I asked the doctor to give it a try
and exchange my current BP-medications for another medication of different medication-group and that "was the ticket"...

[Athena]

Dear UkrainianTGirl

It's hard to say what it may be but from my experience, it sounds like it could be psoriasis. I have 2 small patches of psoriasis on my body that never really goes away but can be calmed into submission through application of topical steroid ointment. There's a bit of cyclical waxing and waning of psoriasis that occurs naturally so sometimes I don't really need to apply much ointment on it. It sounds to me like you need to see a better, more experienced dermatologist! Like with any type of doctor, you have your good ones and you have your not so top of the class ones! Whatever it is, dermatologists are the guys who are best qualified in making a diagnosis.

Sunlight is supposed to help, if it is psoriasis. You might want to try that to see if it can help.

[Cowdog]

Hi UT, Sorry to hear about your problem. I have a recurring skin issue on my hands and arms. Problem began about 3 years into HD. Starts like a blood blister then erupts into a very painful ulcer looking sore. Back of my hands and fingers have been awful at times. Takes forever to heal up.
Nep and GP not much help. I have self internet diagnosed as Bullous Disease of Dialysis. I try to avoid UV exposure by wearing gloves and sleeves when working outside and I believe that has done the most to slow recurrence. Good luck!!

[jeannea]

Your doc thinks it's not a big deal? Of course it's a big deal. That sounds awful. Keep pestering your docs until you get help. This is not ok.

[Charlie B53]

It may be gross looking, but posting pictures could show the obvious differences in all of our 'spots'.

I have had a problem with 'spots' on the back of my hands and forearms.  Dark splotches not red but more like dirty rust.  Other spots build up/grow into thick dry spots that I can 'flake' off without bleeding.

Bump or scrape against most anything and I'll at best just bruise.  Or grow a large blood blister.  If the skin gets broken I bleed profusely as with the aspirin I take I do not clot very well at all.

Derm tells me some of the rusty and flakys are from overexposure to the sun too many years as a kid.  Scandinavian skin, red bearded, I was burnt more than a few times EVERY year.

Derm also tells me the bruising and bleeding are side effects of the long term aspirin use.  I have taken aspirin for YEARS, twice a day to counter the flushing I get from taking Niacin.  I have been thinking about asking my Dr if I can just stop taking the niacin, thus stop taking the aspirin as well.  Thought I'd wait until my annual appt comes up, but maybe I should spell it out in an email and get it done.  I sprung a leak in bed the other night.  Left quite a pool before I woke up feeling the wet spot.  It was a mess.  I'm beginning to think I could bleed out in a hurry if ever in a serious accident.  It's time for a change.

[UkrainianTracksuit]

Thanks everyone for your comments.  I appreciate you taking the time to read this and make suppositions based upon what you have been through.

In the meantime, my husband shared my embarrassing problem with one of his friends. (Thankfully, an older and wiser one.)  Naturally, I facepalmed.  A lovely sort of lunch chitchat.  To make a long story short, this gentleman believes weekly sessions to the banya will “cure” my problem.  However, instead of using regular birch branches for the venik (tree branches for a massage), I should use oak.  Oak has oils that specifically aids skin.  ( don't have oily skin though???) As well, a venik massage helps with inflammation which can manifest itself in sores.  This guy isn't a doctor and sprouted out so much advice.     Apparently, skin problems will be sorted out quickly. (When I hear "cure" I usually run the other way screaming...)

I don’t know how much faith I have in using the banya for health related issues.  To me, it’s always been a relaxation thing (the times I did go).  When I was Stage 4, had a really bad flu and no relief, I used the banya to breathe and it helped.  (Logically...)  Now on dialysis with a more difficult problem, I am unsure.  I know people swear but it to keep healthy but I don't know...

I will go this weekend to try it out for my skin.  However, I am still taking the doctor route.  I want a specific diagnosis and applicable method to do away with these sores.  Like kristina said, slowly I am removing more and more items from daily life to see if this is an allergy.  I totally understand dry skin from dialysis but would it manifest in sores?  I don’t think so…

[Charlie B53]

Personally, I believe that ALL plants and animals were put here for our benefit and use.  We have been around for a very long time, so long that we have forgotten how to use everything most effectively and have become dependent on 'modern' medicine to treat all of our ills.  That's not to say that all natural plant based treatments are hokum, just that we have forgotten which ones work for which afflictions.

It wouldn't surprise me to find the oak massage making an improvement in your condition.  I definitely agree that you try it a few times.

[Athena]

UkrainianTS, that sounds like a lovely idea to try out. Is 'Banya" a reference to hot spa retreats that many East Europeans seem to really enjoy? I know that they have massage therapies alongside the spa water treatment.

[talker]

Look into the use of any of these:
Marshmallow poultices
Marshmallow tea
Marigold salve
Oil of Thyme mixed with a tad of vegetable oil as a poultice
Comfrey salve
Coconut oil directly applied to skin
Aloe Vera
Slippery Elm salve

[Jean]

Charlie B3, they now have no-flush niacin and it works well.

[casper2636]

When I first started dialysis, I had a somewhat similar problem with my skin. I got HUGE blisters on my fingers, hands, arms,feet, legs and chest. I itched so badly and ended up ripping my skin open and oozing all over everything! Bloody, blistered, wrapped and itching for almost 1 year, they finally narrowed it down to an allergy to the Epogen that they were using. None of my doctors had ever heard of that. But, low and behold, they stopped giving me Epogen, and the blisters and itching went away (not without the scars that were left from the trauma of 1 year of open wounds).

[UkrainianTracksuit]

UkrainianTS, that sounds like a lovely idea to try out. Is 'Banya" a reference to hot spa retreats that many East Europeans seem to really enjoy? I know that they have massage therapies alongside the spa water treatment.

It's developed into a spa treatment but it's pretty much a sauna where they hit you with tree branches.     You get to wear a felt hat to protect your hair too.  In between the sauna sessions, people have some snacks or play games.  I went today and it was very relaxing.

As well, casper2636, you may be on to something.  My Epogen was increased around the same time these showed up.  I may have to ask the neph his opinion. 

Thanks everyone...

[kristina]

Hello Ukrainian Tracksuit,
I wish you lots of relaxation and good luck !
Best wishes from Kristina. 

[jeannea]

Talker, I had not heard of marshmallow root before. I was trying to figure out how you make tea out of big fluffy marshmallows. The site I found though says the tea could affect drug absorption so anyone trying it should be careful.

http://www.herbwisdom.com/herb-marshmallow.html

[talker]

Talker, I had not heard of marshmallow root before. I was trying to figure out how you make tea out of big fluffy marshmallows. The site I found though says the tea could affect drug absorption so anyone trying it should be careful.

http://www.herbwisdom.com/herb-marshmallow.html

One does need to be alert to all situations regards happening to ones body.
I offer and suggest, but the use of  said offer is up to the one suffering.
When  one, as 'UkrainianTracksuit' describes the events faced, I shudder with disgust and sympathy.
Yes, I do recheck for all pro and con, when doing things for my body
Yet when push comes to shove, I wind up doing things on my own, as most of what I do is against professional /conventional wisdom.
Were I face with events such as 'UkrainianTracksuit'  descibes, I would do what ever is/was necessary, regardless of what would now be 'that's unwise or dangerous to do' from most professionals.
One can make their own salves and lotions with a very little effort that in my world out performs most, not all prescribed medications, basically with no side effects.
And the journey continues.

[jeannea]

I found the info on a site that promotes marshmallow tea. I seriously doubt they are doctors.

[UkrainianTracksuit]

A bit of an update...

After the banya, these sores seem to have gotten a little bit better.  There isn't as much pain but one still remains which is quite painful on my shoulder.  Perfect place to be rubbed by my bra or shoulder seems.  May have to invest in some shoulder pads.      They are still big but not as bloody/weepy.  They seemed to have "dried up" a little if that is possible.  Going back again on the weekend.

I used some friendly connections to bring my case to an "experienced" and respected dermatologist.  I am waiting for them to get back to me with an appointment date so I can book my travel arrangements and possible HD session (if needed, I hope not.)   

I tried some sunshine today.  Our regular spring/summer weather has arrived and it was 26 º C today with lots of sun.  After a little bit of work and HD, I stuck myself in the backyard for some time.  My neighbor came over to talk and must assume I am a leper or attacked by giant insects now.  Anyway, the next few days are hotter with less sun so I won't be using the "sunshine method" again until next week. 

Still, I am waiting for a diagnosis so a perfect plan can be figured out.  As well, I'd like to take care of the scaring that I know will be left.

[Athena]

I'm so glad that the banya treatment has already had some positive effect! That's a great sign. And I hope you get that appt soon with the 'experienced, respected' dermatologist. I'd keep up with the sauna treatment in the meantime.

[Sugarlump]

Hi UT
Check what medication you are on as some of them can produce quite serious rashes.
I had a terrible rash for 6 months that drove me crazy, blister type sores, intense itching etc mainly on my arms, legs, back and tummy.
Eventually, after several misdiagnoses and various suggested ointments, a different dermatologist said it was my blood pressure medication.
No-one else believed him, especially my other doctors but after a couple of months of stopping that medication it had cleared up completely.

I had to stop wearing a bra for a couple of months because of the sores in that area, couldn't bear it on at all!
So you have my sympathies. I just wanted to lay naked wrapped in a towel most of the time...

[Seaweed]

they dont know nothing , what i believe is phosphorous is to high, Tried to eat better but had to go to dem so i can get cabapentin good for give  for this issuse ,be careful if you take to much your stupid the next day .